Pegasys

[waddles22]

Husband was started on Pegasys after being on Ruxolitinib since 2017.. He has Polycythaemia Vera He has coped really well with Rux but has had to come off owing to large amount of skin cancers over past 12months. Pruritus has been a big issue but Rux really was the answer. Haematologist has started him on Pegasys 45mcg once weekly and also continued with Rux 5mg [to see how he copes]. He has coped really well having nausea and headache within 24hrs but then ok . Only problem is he is experiencing muscle ache and pain this started after 3 weeks injections mainly hands legs and feet he has so far had 8 injections once weekly. Haematologist has decide to leave him at this dose until he sees him end of February Have many others had this reaction

[mikerodol]

Hi. Sorry but I can't really help you with your query. I've always tolerated ruxo really well - never had any adverse effects. Hope all turns out ok

[waddles22 in reply to mikerodol]

Thankyou but the problem is Pegasus not Rux!!! Rux has been a really good drug for him but as I said he's had to stop Rux because of skin cancers. Aches and pains only since hes started Pegasys

[mikerodol in reply to waddles22]

I see. I have never been on Pegasus so again can't really help but best wishes

[DougyW]

Those are all possible side effects of Pegasus. On that dose for many the side effects should subside. Has there been a lessening?

[EPguy]

How are his blood counts? If they are well in good range the 45 dose might be ok to reduce. The pain symptoms you describe are well known with IFN but if it gets too much to bear that could point to more concern.

Moderate muscle aches alone do not implicate any autoimmune condition, but do watch for any further unusual symptoms. You can see my posts why I try to keep members alert here for this rare IFN risk.

[waddles22 in reply to EPguy]

Many thanks for reply. Husbands blood counts are fine haematocrits 0.435 Haemoglobin 146 white count 5.09 platelets 248 The Muscle aches are worrying as this is new to him. What are the further unusual symptoms we should be aware off? You also say that his dose could possibly be reduced.!!! We see his Haematologist in 7 days to access him further.

[EPguy]

I wish there were a standard and certain list of symptoms that signal high risk outcomes with IFN. See my post "My Last Dose" for my dire experience. But as in the PEG label it is encouraging on those aches:

"The most common, but less serious side effects of PEGASYS include:

• flu-like symptoms. Symptoms may include: fever, chills, muscle aches..."

and they may improve with time. I had Malaise through most my Bes experience, my dose was too high. The symptoms to worry are in the black box:

"May cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Monitor closely and withdraw therapy with persistently severe or worsening signs or symptoms of the above disorders". I fell deep into this box.

accessdata.fda.gov/drugsatf...

More broadly anything that suggests an autoimmune (A-I) reaction is a danger signal, neurological or joint troubles are often prominent here. Hands and feet are a common area for such symptoms to show, but it's normally more than just aches: weakness, numbness etc (Thyroid is a separate usually addressable concern) Muscle aches alone are not typical of A-I, while A-I's can and do include such aches among other symptoms. Most pts get plenty of warning on A-I before it's irreversible, I did not. Are there any other unusual symptoms he has?

The dose decision is of course between you and Dr. On counts alone he's in a good place. With that it's best is to see the latest counts and the trend in deciding any dose change. As above per the PEG label there are no urgent safety concerns in your description. Is there anything other than muscle aches that stand out? You'll want a good list for that Dr visit.